You and M.E. Together – a Carer’s Story

August 30, 2013

by Charlotte Dyer

In May 2005 I met my future husband. Living 200 miles apart we led a hectic life rushing between work and family and meeting each other at the weekends for 48 hours before starting all over again. Joel’s job was particularly demanding, meaning he often had to work until the early hours of the morning, snatching a few hours of sleep before making the two hour journey to my house to spend two nights together before he had to make the journey back home again.

His job also required him to travel abroad sometimes and most notable was a trip he took to India during which he felt terribly ill and seemed to take several weeks to recover. In February 2007 we bought our first house together and five months later we stood before our friends and family to say our wedding vows and enter what should have been the most blissful era of our lives together.

It was a fantastic time for us with all the excitement. However things started to change and after a while I noticed Joel was feeling tired a lot of the time. Before too long he was working from home as he felt too exhausted to make the journey to the office. Our personal life was also impacted as we were unable to socialize and Joel became increasingly confined to the house.

I became very concerned and suggested he go to the doctor’s for some tests. He was reluctant at first, having already reported similar symptoms in the past, but in the end he agreed to go anyway.

This resulted in several months of back and forth to the doctor’s as well as numerous blood tests, during which time he was told it was everything from irritable bowel syndrome (IBS) to depression. He finally saw a doctor who referred him to a local National Health Service (NHS) ME/CFS clinic.

The day he was diagnosed

Looking back now, it’s remarkable how insignificant this day seemed to me at the time. It felt like just another in a long line of doctor’s visits and we weren’t expecting anything much to come of it. He came from his appointment to meet me outside my office, as he often did during our lunch hours.

When I came out to meet him he stood on the step outside and said he had seen the specialist who had confirmed a diagnosis of M.E.

Like most people who have no experience of the disease, I had a very limited understanding of the illness and in all honesty my first reaction was utter relief; it wasn’t cancer, as I had convinced myself it would be. I was relieved as I thought this would be a mild, temporary illness that would just leave him tired for a short period of time…I had no idea how wrong I was.

That was four years ago and it was the last day Joel ever went to work.

The specialist suggested in order to prevent his health from deteriorating further he needed to take at least six months leave from work. I couldn’t believe it; six whole months! It seemed like such a long time and I was convinced it wouldn’t take that long for him to recover. I was still under the illusion that this would be like recovering from a bad bout of flu.

The realization of how bad things were soon started to settle in. We began to read and understand more about the illness and despite being off work his health continued to deteriorate. I remember in particular some days I would come home from work in the evening and the post would still be on the door mat and the curtains would still be drawn – he simply didn’t have the energy to deal with it. He was also skipping meals when he didn’t have the energy to go and make something. I couldn’t believe how bad things were.

We also started to experience the mixed reaction to telling colleagues, friends and family the news. As I’m sure anyone who has experience of M.E. knows, the reactions vary hugely. I have compiled a list of the good, the bad, and the downright offensive!!

The Good, the Bad and the Downright Offensive

The Well Meaning Friend

This usually starts with a sympathetic smile and a condolence

“oh I’m sorry to hear that”

but is soon accompanied by

“I had a friend who had that. He’s probably been overdoing it, Have you thought about a self-help book? Maybe he just needs something to take his mind off it”

The Misinformed

This reaction is initially a breath of fresh air (at last someone who finally realizes the seriousness of the illness!) and you immediately want to hug them with gratitude.

“Oh goodness, that’s terrible I’m so sorry; What can we do to help? It’s such a terrible illness, so debilitating”

However this momentary relief is shortly snatched away

“Is it the relapsing remitting kind?”

That’s right, they mean M.S. and now you have to describe the difference and end up somehow feeling like a fraud!

The Know It All

“Oh yes, I know all about that. My friend’s, daughter’s, husband had that. Here’s a list of herbs you need to try, I will dig out the number for this fantastic retreat, it’s expensive but it works. Has he had cognitive behavioral therapy (CBT)…That works wonders, I read all about it in The Times last week, they say that it gets fantastic results.”

And finally…

The Dismissive

“He probably needs something to focus on, I know it’s difficult when you’re feeling ‘down’ but sometimes you need help to just pull yourself out of it!”

I remember when this last one really came into play. It was while I was pregnant with our daughter and people would often comment

“This might be just what he needs, something positive to ‘spur him on’”

as if he had just become somehow bored of life and decided to take a time out until something interesting happened and he decided to start living again.

Sources of Misinformation

The thing is, it’s not really their fault, is it any wonder the general public with no experience of M.E. have this outlook? The so called ‘experts’ are constantly manipulating the press with articles on the effectiveness of CBT and worse, graded exercise therapy (GET), and there is nothing mentioned of the overwhelming evidence of the physical nature of this illness. Couple this with generations of terms like ‘yuppie flu’ which seems particularly inappropriate considering most people with M.E. struggle to make a living at all, let alone be classified as a ‘yuppie’. You can understand why people are so misinformed about this illness. Those at fault aren’t really the general public, who just base their beliefs on loose information they have read in their morning paper, but those who deliberately mislead, manipulate and cover up the truth, in order to pass this off as a mental illness (and there remain plenty of people doing this).

Friends and Family

We also soon realized that some of our friends were falling away, growing tired of our inability to go out and socialize, and we began to hear from them less and less.

The most hurtful of these experiences for me came when we were invited to a friend’s wedding. It was someone I had grown up with, spending our school years with and sharing holidays together. Joel was very ill by the time she phoned to say she was engaged and invited us to her wedding. Our daughter was only a year old at the time. We did our best to plan for the big day, booking a hotel for the night before and planning how to manage the two hour car journey with a sick husband and a young child.

However our daughter had been unwell and Joel was in no fit state to manage the journey. I contacted her to apologise and explain the situation. That was over a year ago and we have heard nothing from her since. My messages have all been ignored. It was around this time we began to realize how isolating this illness can be.

However we have also been blessed with the support of friends and family. Both our families have supported us throughout the course of this illness, being ever understanding of our limitations. We also have a handful of close friends who likewise have offered unwavering support, who have carried out small acts of kindness that make the difference between an unbearable and a bearable day. For us this has come in the form of everything from a very kind friend who once a week would turn up on our doorstep with a homemade loaf of bread, to cards offering words of support and faithful friends who pray for a miracle, but we know that not everyone is as lucky as we have been.

Sources of Support

If you’re struggling with this illness and find yourself without the support of family there is help and support available out there. I have put together a list of organizations you can contact if you need someone to talk to, and remember that web sites like this one provide a valuable community of people who can help and support you when things are hard.

My husband has found Phoenix Rising a fantastic outlet for his own feelings as well as hearing about the experiences of others and gaining information about his illness. It provides a focus for him when he is stuck in the house and needs to connect with people who understand how it feels to have this illness.

Below this article is a list of organizations and resources that you may find helpful. Presence on the list isn’t an endorsement for any of these specific organizations, but many offer helplines, or other support resources that you might find beneficial.

Looking Forward

One thing I have learned is that this illness does not define a person; it is part of you but not who you are.

Our biggest ray of light came in February 2011 at 05:33 in the morning weighing a healthy 8lb 9oz. My husband was what can only be described as an absolute hero during my 24 hour labor. Despite his illness he was an absolute rock. In the days following the birth, he managed to struggle through sleep deprivation and fatigue to help me with the endless sleepless nights.

Every day he inspires me, I watch him sometimes broken and exhausted find the strength to make our daughter laugh and to worry about our needs as well as his own.

There is a huge lack of provision for those suffering from M.E. let alone the families behind them. We have such a long way to go before this illness is given the recognition it deserves.

But we do have something. We have each other and together are stronger, there is after all, strength in numbers. Earlier this year we saw sufferers come together in May for international M.E. awareness month and we were reminded that although a single blade of sweetgrass on its own lacks strength, when many blades are woven together they become strong and effective, fulfilling a purpose.

Behind every person with M.E. there is a story. My husband is proof that you can have M.E. and still be someone’s hero. And as the saying goes, ‘the light always shines brightest in the darkness’ so all we can do now is keep going. You and M.E together.

Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we’d love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

Helplines and support groups: UK

ME Association website offers information and support. It has a number of helpful resources including a helpline and over 70 booklets you can download. You can also select your location from a list and they will provide you with a list of support groups local to you.

Tymes Trust is the longest established national UK service for children and young people with ME and their families. The site contains some free information, or you can buy membership for a small fee and gain access to a support line.

Action for M.E is an organization providing practical information and support. Their website provides information and advice on issues such as welfare, employment, research and social care along with many others. They also have dedicated areas for children and young people, family and friends and professionals as well as information intended for carers.

Charlotte, I so understand your journey. I am the care giver for our son who came down with ME/ CFS after having mono in the Fall of 2005. I have found the besides family and friends, doctors that understand the disease are hard to find. I cannot tell you how many we have seen that have treated us so poorly that we have left their office in tears and depression! That is such a setback for someone so ill and their caregiver:( We have searched for answers for years. We will continue, but I no longer allow anyone to talk down to us. I just cannot allow it, it is so devastating to both our health.

Behind every person with M.E. there is a story. My husband is proof that you can have M.E. and still be someone's hero. And as the saying goes, 'the light always shines brightest in the darkness' so all we can do now is keep going. You and M.E together.

Thanks so much for sharing your story Charlotte. As a carer for my 22 year-old daughter my hat's off to you for being able to articulate this life and love you and your family have, with challenges unrecognised by so many. I cannot imagine how you and your husband cope with everything while raising an infant, who can bring so much joy but requires so much work!

Charlotte, I so understand your journey. I am the care giver for our son who came down with ME/ CFS after having mono in the Fall of 2005. I have found the besides family and friends, doctors that understand the disease are hard to find. I cannot tell you how many we have seen that have treated us so poorly that we have left their office in tears and depression! That is such a setback for someone so ill and their caregiver:( We have searched for answers for years. We will continue, but I no longer allow anyone to talk down to us. I just cannot allow it, it is so devastating to both our health.

Thank you Judy. I am so sorry to hear you have struggled to get the help you and your son deserve from the doctors. Unfortunately it's a common problem for people with ME/CFS we too have experienced some some very negative reactions when all we want is to be heard and taken seriously. It sounds like your doing a fantastic job looking out for your son and standing up for yourself, I know how hard that can be. Hang in there!

Thanks so much for sharing your story Charlotte. As a carer for my 22 year-old daughter my hat's off to you for being able to articulate this life and love you and your family have, with challenges unrecognised by so many. I cannot imagine how you and your husband cope with everything while raising an infant, who can bring so much joy but requires so much work!

Thank you for your kind message, I was very anxious as this is my first attempt at an article but I have had some lovely messages. I can only imagine how difficult it is for you looking after your daughter. Since having our daughter Joel and I often wonder how parents cope, it is so difficult to see your child suffer even with normal day to day illness let alone something like ME. I'm sure you give each other a lot of love and support. I believe struggles like this sometimes bind us closer together.

Thank you for your kind message, I was very anxious as this is my first attempt at an article but I have had some lovely messages. I can only imagine how difficult it is for you looking after your daughter. Since having our daughter Joel and I often wonder how parents cope, it is so difficult to see your child suffer even with normal day to day illness let alone something like ME. I'm sure you give each other a lot of love and support. I believe struggles like this sometimes bind us closer together.

I have always loved and admired my daughter as she is both "mine" and so different from me. She has always had strengths I don't have, and I've been amazed throughout our lives how this other human, who has been in my life all these years, can teach me so much. However, this illness has brought us together in a way I could never have imagined. We have found a shared humanity in this hole, giving me strength and joy and an intimate connection with her. And I know it is so important to her too, especially given how isolating this illness is. This epidermis of ours separates us in more ways than we realise, but a shared struggle forces us to reveal much more of ourselves. This is a beautiful thing.

A sad but eminently readable article. Have you considered trying to publish it elsewhere? Women-oriented magazines?

Thank you. I haven't thought of sending this anywhere else. In honesty I was very anxious about it as it is my first article, my husband convinced me send it in. Phoenix Rising has been a fantastic help to us. Reading other people's stories and articles has helped us come to terms with his illness and feel less alone. so I thought maybe someone out there might want to read ours. I am completely amazed at all the lovely messages!

I agree that it is the scum who knowingly deceive other doctors about ME who are to blame (and, to a lesser extent the bodies that should be looking into the deception such as journals and physician associations) ,not the laypeople or even really general practitioners who are relying on the supposed experts to tell them the truth.

All sections of the Phoenix Rising website are compiled by a layman. They are not a substitute for a physician and are for informational uses only. Please discuss any treatments in these pages with your physician.